Thoughts, advice, wisdom anyone?

I had actual major cancer, but here goes. I chose a BMX, although at DX time I "only" had LCIS in one breast. There were cysts and other suspicious things in the other breast that they wanted to biopsy/remove and then monitor that breast carefully every 3 months, no doubt meaning more biopsies/removals etc down the road, not to mention the hassle, pain and worry. 

One doctor tried to talk me out of the BMX, while the doc I went with in the end supported my choice. He said the cancer was quite likely to recur in the other breast and that a prophylactic MX made sense. In the end, stage 0 was found inthe "good" breast, so I am very glad I got rid of it and saved myself a surgery down the road and possibly saved myself yet another round of chemo as well.

I have chosen not to reconstruct, am 48 and 3 months out from the surgery, just finished chemo, rads coming up after New Year. So far, I only feel relief in being rid of what felt like a pack of dynamite strapped to my chest. I thought I would mourn the boobs more, but I just haven't. I feel no less feminine or attractive, which has surprised me since I am quite vain and particular about weird stuff. It helps that my husband is completely supportive and it is obviously also just a very personal thing, so it really depends how you feel about it. 

Duffy - when I was diagnoised with ALH, after numberous biopsies over the years I chose PBMX because I didn't want to take Tamoxifen and I didn't want the worry and constant testing.  I tested negative for BRCA, but my risk was considered 40% for getting bc at some point.  I have been very happy with the results - I had nipple/sparing with implants.  Good luck and hugs.

Duffy- I chose not to have recon too, im very ok with it, if down the road you decide that you want to have it you can and will have more time to decide which one you want to go with. Im sorry you are having such bad headaches over this, If you can , just try to take your mind off of everything for now and please try to enjoy your holidays.

You may want to check out the lymphedema thread on here when you get a chance, you can develop it after having lymph nodes removed. i did not have a problem with it but you can and these threads will help you tremendously.

Have a merry christmas!

Hugs

Debbie

Hi Duffy11,

My history sounds very similar to yours.  Extensive family history (although, I tested negative for BRCA).  Everytime I had a mamogram or MRI it lead to a biospsy, which lead to an exisional.  I finallly decided with the blessing of my breast specialist on a PBM. I had been diagnosed with LCIS, ADH and ALH all in the left breast.

I had the surgery December 7th.  My surgeon told me I have dodged a very nasty bullet.  The pathology came back that I had LCIS, ALH and ADH still in the left breas, but that I also had extensive ALH and ADH in the right breast, which had never been picked up on any imaging.

Its a very personal desicion, but I do not regret it for one minute.  The stress of mamograms, MRI's biopsies and waiting for results is over.  I couldn't be happier.

Please let me know if you have any questions.... Merry Christmas and Good Luck!

Valarie

Duffy------it's amazing how different doctors feel about the same condition. I was diagnosed with LCIS 8 years ago and my risk is further elevated by my family history of bc (mom had ILC). Even with that combined elevated risk, all my docs (bs, onc, pcp, gyn, and rad) felt PBMs were too drastic  for my situation. So I took tamoxifen for 5 years, and I still continue with high risk surveillance of alternating mammos and MRIs every 6 months, and I have been taking evista now for almost 3 years. I haven't needed any further biopsies, so I guess the meds are doing their job. I think it all boils down to a very personal decision. Only you can decide when enough is enough. I may be facing bilat masts sometime in my future, but I'm not ready to go the route of PBMs at this point. Good luck with your surgery and recovery.

anne 

Duffy, I've been in your shoes and did the BMX. No recon, totally happy. I am going to make a suggestion to you to run by your doctors. It's about the sentinel node surgery. If I were you (and I've been you) I would try and avoid this. What I did was do excisional biopsy on the areas of my MRI that lighted up. This way, if they were cancer we would know to do the sentinel nodes and of they were nothing, we would do the BMX without sentinel nodes out. In other words, two sets of surgery. First the excisional followed by the MX.



Yes, there is some risk that there is still hidden cancer, but then again, you are talking about both arms, the rest of your life - lymphedema risk. In my case, we found no cancer on excision and no cancer on the MX so skipping the sentinel node removal worked in my case and my lumphedem risk is much lower this way. Ask your doc what they think.



Btw, my surgeon did the biopsies by cutting around the areola and taking out the tissue from there so I would not have two sets of scars. Before this surgeon, I met with a different surgeon who "always" took the sentinel nodes and cut straight incisions for biopsy surgery. I did not go with her and instead found my BS who is brilliant. Made a lot of difference.

Duffy, I had my sentinel node biopsy right before my mx as well, I let my dr know how scared i was right before surgery and she said she would make sure i had enough meds to keep me comfortable, that was the last thing i remember, i dont remember my sentinal node biopsy at all, so make sure you ask for enough stuff to sedate you so you wont feel anything, let your Dr know your concerns and you should be fine.